The Colon Club

Hello all

I suppose I could wait a couple of days to find this out, but after reading SkiFletch's message about the port (you go SkiFletch, will be thinking about you on Wednesday) it made me think about chemo pumps. What are THEY like? Are they giant? If anyone knows what insulin pumps are like (I've used one for over 20 year, have had type1 diabetes for 44 years) are they small like those? How can you sleep with them? Do you change the chemo syringe yourself or have to keep running back to your MD? Any information would be gratefully welcomed. Thanks! Bev

My pump was about 4" x 8" and I wore it in a fanny pack around my waist. I slept with it around my waist (just put it over my pj's or gown); the only time I took it off was to shower, and then I hung it on a hook right outside the shower. It stayed on for 48 hours continuously, until I went back to the infusion suite to have it removed --it would start beeping about an hour before it ran out, if I recall. I wouldn't see the pump again until my next cycle. I have read here that some people get their's removed at home by a visiting nurse. I never did anything to it myself and never had any problems with it (except that I hated it).

Same here. I wore my chemo pump in a fanny pack. At night I'd take the fanny pack off and hang it over the bed post. I put a bathroom mat down on the floor alongside the bed with the rubber side facing up so that when I stepped onto it, it would remind me that I had to take the fanny pack off the bed post so I could go to the bathroom.
I have a port and it's a small needle that's flush against the port with a sterile covering over it.
Hope everything goes well for you.
John

I've used both an electronic pump and what's called the Intermate baxter pump. I have to say that I prefer the baxter pump. It is less intrusive and easier to manage. The nurses at Sloan call it the baby bottle because that's what it looks like. It is gravity fed so there is no noise or beeping. The electronic one was a real PITA for me. I hated the thing. The bottle is light weight and liek I said easier to manage, You can take it right into the shower with you.

Pumps come in all shapes and sizes - I've used 4x8 rectangular pumps, used the MSKCC 'baby bottle' pump (which is body-heat regulated, not gravity-fed, so it can administer the dose too fast if you are prone to hot flashes on chemo--thus, my docs used it only once on me!) and used the baton-shaped Ambit pumps last year which IMO were the best compromise between them all -- more reliable and used fewer batteries than the Baxter pumps, smaller and easier to carry/sleep with.

Bev,
I had a box, the 4x8, battery operated one.They give you extra batteries.It was not a fanny pack but like a little shoulder purse but I'm sure you could tighten the strap and wear it as a fanny pack or put it in a fanny pack.I would get it from Monday to Wednesday and it was hooked up to my picc line in my arm(I have never had a port).It starts to beep when it gets low but that doesn't mean that its out of stuff you usually have about an hour left.It will also beep if you get a kink or air bubble in the line.They can show you how to stop the beeping and reset it.Sponge bath or shower so it doesn't get wet.The cord is long enough (sometimes too long) that you can leave it outside the shower. When I went to the bathroom I had a special place I would put it.If you put in the same place each time you won't forget it.
1.NEVER DROP IT IN THE TOILET!(It Happens.)
At night I would place it on a pillow on the bed or on a mat on the floor.You get used to it so you can sleep and the chemo makes you tired. You just can't roll over as easily without moving the cord or box.I'm sure this would be much easier if it were a fanny pack.
2.Never get the cord/line caught in a shower door, dishwasher door,fridge door,car door,any door,etc...(It Happens.)
It will become your new buddy.
Candy

I am familiar with both insulin pumps and the 5-FU pumps that use body temperature to control a valve. The 5-FU pumps are much bigger than insulin pumps since significantly more fluid/medicine is put into your body. The pumps that I used have a balloon that exerts a pressure on the fluid, moving it through the temperature-dependent valve. It was nice to use since it didn't have any mechanical parts and made no noise. For the FOLFOX treatments, the insertion point of the pump, in my case through a port, does not need to be changed as it is in place for 46 hours. The balloon was held in a plastic bottle, roughly the size of a 1 liter bottle, and fit into a fanny pack.

It is certainly more cumbersome than an insulin pump, but not too uncomfortable.

Hope this helps,
Jeremy

My experience was pretty much like KellyBelle's. At night you could sometimes hear a little "swish" when it was pumping the chemo through the hose, but if I just put the covers over it I couldn't hear anything. The only time it really started to bug me was when I had to wear it during radiation treatment - so I had it on 24/7 for almost 6 weeks straight. At that point I was just sick of the constant reminder of being on chemo and was very glad to have a break from it.

I'd wear the tube (that attached the pump to my port) under my shirt, so no one even knew I was wearing it.

KellyBelle wrote:My pump was about 4" x 8" and I wore it in a fanny pack around my waist. I slept with it around my waist (just put it over my pj's or gown); the only time I took it off was to shower, and then I hung it on a hook right outside the shower. It stayed on for 48 hours continuously, until I went back to the infusion suite to have it removed --it would start beeping about an hour before it ran out, if I recall. I wouldn't see the pump again until my next cycle. I have read here that some people get their's removed at home by a visiting nurse. I never did anything to it myself and never had any problems with it (except that I hated it).

I hated mine too. I bought special shirts to try to hide the bandage over my port site. I wore my pump in a little purse thing I had at home. The cancer clinic tried to give me a fanny pack, but I refused. It was big and bulky and ugly.
They have tried to give me other things , like tote bags with the name of the clinic on the side. Just what I wanted...walking around advertising I was a cancer patient.


I work in a medical office and thought one of the nurses there could have removed the pump after it started beeping, but that idea was slapped down. Something about only specially trained chemo therapy nurses were allowed to do it. Hogwash, I thought, but I obeyed and went to the clinic.

3. Never let your new kitten in your bedroom while your sleep with the pump. She may think the tubing is like a piece of yarn that she is supposed to play with. (This happened to me, her claws poked holes in the tubing and I woke up with chemo squirting on me)... was gonna name her chemo, but noone else thought that was a good name.

4. Never lean over the oven while taking a pie out of the oven and burn your tubing... no I didn't burn it, but almost!

I had the same 4x8 pump that most people are describing. I had actually tried to put it in a purse so when I worked, the kids at my school would not notice it. NOT a good idea. Nothing worse than pulling on the tubes accidentally. And it was a pain. Wearing it like a fanny pack is best.

I also kept it around my waist while sleeping. It prevents it falling off the bed. And not too be too personal - but it makes sex rather humorous!

A couple of times the alarm on it went off while I was wearing it and the help line was great. They walked me through everything I needed to do for it.

seussfan wrote:And not too be too personal - but it makes sex rather humorous!

You're my hero! I couldn't even look at myself in the mirror with that thing on, let alone have sex!

Johnnyt, that's a great idea of putting a bath mat next to the bed so you notice it when you get up during the night. My husband sleeps with his fanny pack on a nightstand. The tube is really long. Luckily he sleeps on his back normally so it's not too big of a deal. But he has forgotten about it and almost walked away from it during the night. I'll put down a mat next time. Thank you for the great suggestion.

KellyBelle wrote:

seussfan wrote:And not too be too personal - but it makes sex rather humorous!

You're my hero! I couldn't even look at myself in the mirror with that thing on, let alone have sex!

Hey - life has to go on!

seussfan wrote:

KellyBelle wrote:

seussfan wrote:And not too be too personal - but it makes sex rather humorous!

You're my hero! I couldn't even look at myself in the mirror with that thing on, let alone have sex!

Hey - life has to go on!

Yup. I've got the qual too.